Sometimes I just want to give up!

I'm feeling really unwell tonight. I want to sleep; but I can't. My eyes are on fire; they feel so dry and almost like I've got grit in them, and they're awfully itchy. I normally always have a very faint malar rash, but tonight it's come out like I've been sun burnt, it's very dry and extremely itchy and it's making the rest of my face itch, too. In fact, pretty much everywhere is itching. I've taken an antihistamine and it's done absolutely nothing. I took cocodamol and ibroprofen and that hasn't helped, except calm my achy legs. I'm also currently experiencing chronic uti infections...everytime I get rid of one it comes back within two weeks, it's driving me insane :-( just like everything else. It's hard to find the strength to get out of bed everyday and I always feel like I'm whinging all the time even though my partner wants me to tell him when I'm in pain so that he can help me, and always listens to me and has all the time in the world for my whining, I just feel like a burden sometimes. And I'm sick of telling my boys that mummy can't play or mummy has to test and so on. It's hard to keep positive. But, I guess I'll just keep on fighting, even though I feel like giving up and hibernating forever!! But that won't do me any good I suppose.

Does anyone else suffer from reaccurant uti infections? Or any other type of infection. My white blood cells are very low so I suppose it makes sense for me to keep getting ill.

Hope everyone is doing well. Thanks for reading, now I have to resume scratching my skin !

9 Replies

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  • Sorry to hear you're having such a bad time. I know how bad the itchy skin and eyes can be. Don't know what meds you are on but maybe worth contacting your rheumatologist or nurse specialist especially if these symptoms are new but also as there may be a medication change that might help. I take hydroxychloroquine and methotrexate with rituximab infusions twice a year, but have been given corticosteroid injections to help settle intermittent flare problems if they occur (sometimes skin reactions & itching, sometimes specific joints).

    Have you mentioned the eye problems to rheumatology or been tested / diagnosed with Sjorgrens? If not would be worth raising with you your clinical team especially if you also have dry mouth and nose too.I find using regular moisturising eye drops and isotonic nasal spray help manage the gritty hot eyes and dry nose.

    I also get a lot of UTI like symptoms but my WCC is not low and it's rarely an actual infection on urine testing. Have you had your urine checked for protein / infection?

    Do you have a review with your rheumatologist planned soon or access to a rheumatology nurse specialist ? Sounds like it would be helpful to talk your symptoms through with them.

    Best wishes

  • Hi, thanks for your reply. I've woken up this morning with little sleep and feel like I've been trampled by a stampede. I have been diagnosed with APS as well as lupus, currently im not on any meds Becuase my rehumy assumed the lupus was inactive seen as though I wasn't having such bad symptoms but obviously it doesn't seem that way anymore. I should have an appointment come soon trough as I see them three monthly and it's been three months since my last appointment so hopefully I'll get some help. I haven't been diagnosed with sjorgrens, but I have never had these issues before, it's only come about the past two months so I'll Deffo be mentioning it at the next appointment. And yes I have my urine tested every time I go see the rehumy and also the dr. This is the third infection in a row after having a short break, last time at then rehumy I had a lot of protein in the urine but on a re test last month it was fine. Thanks again for your response X hope you're well, take care.

  • You may find that you've got Sjogrens alongside your lupus.

    If that's the case you will be having dry eyes. For that you will need to see your doctor as they will have to prescribe you the necessary drops for your eyes.

    My eyes were the same at the beginning of the week and my mum just picked up some drops from the chemist, but when I used them they just burnt my eyes, I may as well have put acid in them.

    So you must see your gp for the eye problem.

    Although it sounds like you need to see your Rheumy to get back on the hydroxychloroquine which will hopefully settle you back down again.

    Xxx

  • Hi Stacieann

    Sorry to read of your awful symptoms making life so tough. Something that could help your UTI's is drinking cranberry juice. It's good for preventing and easing them. Have your tests been positive for infection?. If not and it goes on you may need to be referred to a Urologist for further tests as you could have a condition called interstitial cystitis which mimics infection symptoms. Once you get your Rheumy appt thru if it is a long time hence, might be worth ringing the clinic to ask to go on a cancellation list. Hope you feel better soon. X

  • Thanks for the reply. Yes everytime I test positive for an infection. Luckily this one seems to have stopped a few hours after it started! Hope you're well x Stacey

  • Definitely sounds like a flare maybe caused by being in sun the other day but whatever you really need GP and rheumy to be taking this seriously.

    Really feel for you as being a mom the maternal instinct to be mom at all times is very strong but remember you can't look after them if you don't look after yourself.

    Thumbs up for supportive ,kind and caring partner !

    Let him help and listen as he obviously wants to do something to make things easier and as he cant cure you helping will make him feel at least useful.

    Let your GP know things have got worse so it's on your notes and they can sort out the uti while waiting for rheumy appt.

    Have you read coco (barnclown) posts/replies 're ongoing uti s? She has a good insight and long history with these .

    Do think you need some sort of meds to start and you can get sunscreen on prescription to help prevent further probs if you are as many here are sun sensitive.

    Hope things settle soon

  • Thanks so much for reply :-) feeling much better now! My partner brought me some hay fever tablets and also eye drops and it seems to be keeping it at bay. I'll take a look at her posts, thanks again :-) x

  • Hi, I've been having UTI's for the past two years and antibiotics just weren't helping much. They would be gone for a few days and then back again.

    I started to take high doses of vitamin c and that has really been helping. For the first time I feel they are better. I've only been in the vitamin c for a couple of weeks but for the past week or so j haven't had any symptoms...which is amazing to me. It might be worth a try.

    Also it seems to help some with the pain and fatigue. All the best

  • hi i know what you mean but yougot to keep fighting ive had the dry eyes bit drive you up the wall and the itch skin.

    But here is the hope bit ive had this thing 4 times now first time 1991 then 2005 then 2009 then this time 20016 andf it always took me 9 months to get rid not lying down to be counted.

    and i know how it feel to feal usless

    20 weeks ago no problem then wham hello im back SO U JUST THINK THIS THING YOU GOT LUPUS CAN GO INTO REMISSION AS FAST AS IT CAME (i live in hope again and push my body like mad ) even though its stronger this time than ever.

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